Newly diagnosed

Not sure what I’m doing here. Diagnosed 2 days ago. How do I get help

Hello Irishsetter
You were diagnosed two days ago and say you don’t know what you are doing here. At an educated guess I think your world has probably come crashing down, you are feeling scared and probably very vulnerable and don’t know what to do or which way to turn. If that is so you are very much in the right place. I’m just on my way out so haven’t time to write fully just now but I did think you needed to know quite quickly that your post had been read and that you had some kind of reply. I will catch up with you later and others may well also stop by in the interim… So don’t panic, just give us a bit of time to get back to you properly.

Hi Irishsetter,

not sure welcome is the right word in this situation but you are welcome. A diagnosis of Parkonsons is a massive shock and it can be ahrd to know where to trun for information and advice. ParkinsonUK’s website has lots of information about the illness and treatments. The forum is good for queires, advice and support. What kind of help do you need?

Hello Irishsetter

Sorry to be a bit slow in getting back to you and I see you have had a reply to your post and I would agree with what Podd has said.

You don’t have to do anything immediately except give yourself time to get used to the diagnosis. You will probably find that your emotions are all over the place and cover absolutely any and every emotion you can possibly think of. This is all perfectly normal and is just the process we here on the forum have all been through in one form or another before reaching a more settled patch as we each found our feet. It will happen to you too. I can’t say when or how long it will take because it’s your Parkinson’s and you may have to take it on trust at the moment because it is probably hard for you to believe right now, but it will happen.

There’s a couple of things worth mentioning at this point.

  1. The condition is slow moving in most so not only do you have time to adapt and adjust to any change but many of us have several very good years before Parkinson’s may take a stronger hold. I was diagnosed 14 years ago in early December. I am still doing well, able to live on my own and basically get on with the business of living.
  2. There is no right or wrong way to live with Parkinson’s and you will find the way that is right for you in time.
  3. Three days ago you didn’t have your diagnosis, two days ago you did - that’s the only thing that’s changed. You are still you. Personally I never give Parkinson’s star billing. I am always Tot first and I happen to have Parkinson’s. The biggest challenge in my opinion, is with yourself and your mindset - and not let the strong, loud and difficult to ignore voice take over. Not always easy to do I grant you but worth it because you are and always will be more than just a person with Parkinson’s.
  4. Be selective about what you read. Many have a need to read everything they can lay their hands on in the early days and end up scaring themselves silly or not being able to see the wood for the trees and it serves absolutely no purpose whatsoever.

I am not going to suggest it’s a bundle of fun living with Parkinson’s. It can be challenging, annoying, frustrating and sometimes you will feel like shutting the door on the world. That is not the reality 24/7 and it is only the end of the world if you choose to see it in those terms.

It may not be the life I envisaged for myself but for me it’s more about life taking a different turn in the road, that’s all. My way may not be your way but maybe it will help get you started on finding your own unique style.

I hope this help a little.



Hi you will probably be put in contact with a consultant & a Parkinson’s nurse specialist. There’s also support groups. This is the path we’re were put on for my husband who was diagnosed 4yrs ago. We realised once we learned more about it he’d shown signs much earlier. To be fair we didn’t know about Parkinson’s. Just thought it was shaking. We realise now shaking is one of many symptoms. Loss of taste & smell. Slowing down, speech, balance etc. One day at a time, everyone’s different. Give yourself time. Good luck

Welcome @Irishsetter
I joined as i was fiagnosed recently.too.
I think it’s about first pricessing the fact thst you’ve been given a life changing diagnosis.
You’re not alone…
Sending love